New disease registry puts patients in control of data

A new disease registry aims to line up more people for clinical trials by giving patients ultimate control over the use of their information.The website--dubbed Reg4All--is the brainchild of Genetic Alliance, a nonprofit that advocates for people with rare genetic disorders. It will launch April 4, reports Technology Review.  

"The usual way of recruiting people is astoundingly bad," Sharon Terry, president and CEO of Genetic Alliance, told Technology Review. The consent forms used by many current biobanks and DNA databases give participants little control over the data.

Numerous surveys have found that patients want the final say over who sees their information and how it is used. The new site will allow participants to share their information with particular researchers, institutions or studies of a specific disease. They also will be able to track who uses their data and how.

For the new venture, Genetic Alliance will partner with the company Private Access, which will provide the "privacy layer." Genetic Alliance will hold user data stripped of identifying information, while Private Access will hold the key to identifying users and their preferences.

Genetic Alliance already runs a disease registry and biobank of samples from patients with eight different diseases and the new effort will include an expansion of that.

The signup process involves answering a series of questions that adapt to the patient's responses. The software will suggest studies based on their answers.

Krishanu Saha, a stem cell engineer at the University of Wisconsin-Madison, told Technology Review that he believes more people will be interested in participating in clinical trials if they retain control of their information.

"Exploring the notion of privacy as not the same for everyone is an interesting concept. More than just disclosure, a true partnership would involve some sharing of power," he said.

Better data standards and disease registries were cited as key elements in furthering value-based healthcare in a report published last summer by the Boston Consulting Group. New consent models and transparency are especially essential to signing up study subjects from social media, bioethicists wrote recently in an essay published in Science Translational Medicine.

Meanwhile, the European Union hopes to crowdsource collaboration globally with an investment of 38 million Euros (more than $50 million) focusing on furthering understanding of rare diseases.

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